Wednesday, January 18, 2012

Sometimes I just don't feel like writing it all down, sometimes I don't have the time and sometimes I just procrastinate - lately it's been all three. No more putting it off though. Surgery is set for March 20th and time is already flying. Again, there is so much to do to prepare not only for the surgery but the hospital stay. Is is wrong to say I'm excited? There really were a lot of good things that came from her first surgery with regards to behavior and development (and it lateralized her seizures making the upcoming surgery possible where it was not before) so I'm excited about what this next surgery could bring. That being said - this surgery will be SO much more involved, more invasive, more risks, more time, etc... It is very serious and the journey to arrive at the decision for more surgery has not been as easy this time around. The determining factor - she's still having 5-12 moderate seizures every day.

"For I know the plans I have for you" declares the Lord, "plans to prosper you and not to harm you. Plans to give you hope and a future" Jeremiah 29:11 This verse found us during our decisions and preparations for the last surgery in May and it still pops up during the most odd and most perfect situations. This time around Romans 5: 3-5 keeps presenting itself "...but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint..." Looking forward to seeing how this verse works in our lives like Jer 29:11 continues to...

As for surgery, we will arrive at Children's on Monday, March 19 for preop work. On Tuesday they will perform the first stage of the surgery which will be to remove a portion of her skull and place grids on and into the frontal and parietal lobes of the right hemisphere (testing in Oct. narrowed to these areas). They will replace the skull but she will have wires and possibly a drain and we will be in a room where a nurse will be with us around the clock. The grids will monitor seizure activity for 5-7 days to narrow focal points to certain locations in these two lobes of her brain. After monitoring and motor mapping is complete her docs will come to us with the number of focal points and what the risks are for removing each of them (ie what do they control, how easy will it be to remove, etc...)and we will most likely have to make some pretty difficult decisions at this time. The following Tuesday they will go in and remove the areas that can be removed. We will be in the hospital 1-2 weeks for recovery and possibly 3-4 depending on the amount of therapy required for weakness of the left side of her body (referring back to the hard decisions).

Camilla's Story

Camilla is such a blessing! In April of 2006, at just 6 months old, she was diagnosed with Infantile Spasms, a very rare and devastating form of childhood epilepsy. Despite numerous medications, the Ketogenic Diet, a Vagus Nerve Stimulator and a Corpus Callosotomy she continued to have daily seizures until undergoing a grid/resection surgery in March of 2012. She is still challenged by severe developmental delay and she doesn't speak but this sweet, energetic and happy little girl amazes us everyday with her grace, her beautiful smile and her contagious laugh.